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The Next Phase of Service Delivery: Putting Clients More in Control

The growing voice of consumers and families has played a key role in determining how and where public mental health services are provided at both state and local levels. Consumers and family members have been increasingly influential in changing the role of state hospitals and developing community-based services.


Consumers and family members have been increasingly influential in changing the role of state hospitals and developing community-based services.


Despite the flexibility provided by the range of services available under CBW and Medicaid optional services, many advocates for people with disabilities remain frustrated with the kinds of services available, their quality, and their responsiveness to clients’ needs. Advocates often complain that provider agencies “dictate” the service plan for clients, and do not do enough to assist clients to integrate fully in community life. They want more influence over the services they can receive, who delivers them, and how and when they are delivered. This is known as the “self determination movement.” Self determination and choice are rapidly becoming dominant themes for people with disabilities and theirfamilies.

Some states and localities have responded to this by asking “How can we change our system to enable people with disabilities and families to truly control resources?”

The Economics of Self Determination

Various ideas are being discussed to finance a service delivery system that would allow more self determination. One approach is similar to a managed care approach in that it would allow funding streams for various services to be combined, and each eligible client would be given a fixed budget for services that could be selected, and even designed, by the client — perhaps together with family members or guardians, and the assistance of a case manager or service broker. Rhode Island is proposing to restructure its system for people with developmental disabilities along this approach. However, proponents of this approach want to provide more choice than is generally available in a managed care arrangement.

An even more “radical” approach calls for converting Medicaid benefits into the equivalent of cash, or vouchers that could be used almost like cash for beneficiaries to purchase services, equipment, hire their own attendants, acquire their own transportation, etc. Both of these approaches would require administrative waivers from current Medicaid law, or amending the Medicaid law. The dangers in this approach include: susceptibility to fraud; lack of quality control; no system or consistency for training and compensating service providers; underfunding of services relative to what beneficiaries are currently entitled to; inability to find appropriate services or sufficient service capacity.

These approaches raise many labor rights issues, however. It is well documented that as service delivery moved from large, state-operated institutions, labor standards for unorganized private-sector workers who deliver services to people with disabilities deteriorated dramatically. Wage levels are low; pension, health insurance and other benefits are almost non-existent; training opportunities and job ladders are minimal; and workers’ rights to organize are violated repeatedly. Poor labor conditions, which lead to high turnover rates, hinder high- quality, community-delivered services. Well-intentioned self-determination initiatives could make a bad situation worse.

The overall issue is: How can we support the goals of consumers and families and ensure that states don’t develop systems which are based almost solely on price competition, with no quality assurance and labor standards, in ways that protect the publicly operated safety net and safeguard the interests of AFSCME’s members?

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